::vulnerable::

throughout my pregnancy with crosby and during his NICU stay, i have been racked with some of the deepest emotions i have ever experienced.

when i found out i was pregnant with him, i felt sheer joy and thankfulness about the miracle of his conception.

while i was having contractions in my second trimester and hemorrhaging, i felt such intense concern and worry.  and yet i also felt the Lord's presence so deeply.

upon admission to the hospital, i felt disbelief about our grave state and also could not believe that i could possibly be having a baby so soon.  

in the days leading up to his delivery, i felt such a heightened sense of awareness about what was going on with my body and with his.  i felt such dread knowing they were pushing us towards an early c-section.

in the hour prior to his c-section, i felt the Lord's peace transcend upon me as i knew with certainty that it was time.

when crosby was pulled out of me, i was absolutely heartbroken that he did not cry and to hear his apgar score.

and then i was absolutely elated minutes later when ryan affirmed that he was alive.  

as we have walked through the last 2 months of his NICU stay, there have been moments of deep sadness and also of deep joy. 

 holding him for the first time was one of the most emotional experiences of my life. 

 leaving the hospital without my baby was one of the worst times in my life.

and an emotion that neither ryan nor i have been able to shake during it all has been guilt.

i have struggled so much wondering if there was anything i should have done differently during my pregnancy.

i have struggled so much knowing that i am not mothering my best either at home or in the hospital.

i have struggled so much having my children living in two separate places.

i have struggled so much worrying that crosby has felt alone and has not been comforted at times.

i have struggled so much feeling like in all areas of my life, i am not doing my best.

and all of this guilt came crashing down on me on thursday.  i just felt overwhelmed by it all and like i could bear it no more.

having your children separated in two different places is absolutely so unnatural feeling.

and then, friday morning, i was met with the best news i've had in a long time.

our nurse practitioner mentioned the word "home" to us.  

prior to this, when we have mentioned going home, everyone has politely hedged the question.

but, "home" and "crosby" were both in the same sentence on friday morning.

they have taken crosby off of caffeine and if he can go for eight days without forgetting to breathe or significantly dropping his heart rate, he will be very close to going home!

i felt as if at one of my lower and harder moments throughout our NICU stay, the Lord lifted me out of the valley of darkness and showed me His goodness.  

and for that i could not be more thankful.  

Psalm 139

 ¹ You have searched me, LORD,
   and you know me.
² You know when I sit and when I rise;
   you perceive my thoughts from afar.
³ You discern my going out and my lying down;
   you are familiar with all my ways.
⁴ Before a word is on my tongue
   you, LORD, know it completely.
⁵ You hem me in behind and before,
   and you lay your hand upon me.
⁶ Such knowledge is too wonderful for me,
   too lofty for me to attain.
 ⁷ Where can I go from your Spirit?
   Where can I flee from your presence?
⁸ If I go up to the heavens, you are there;
   if I make my bed in the depths, you are there.
⁹ If I rise on the wings of the dawn,
   if I settle on the far side of the sea,
¹⁰ even there your hand will guide me,
   your right hand will hold me fast.
¹¹ If I say, “Surely the darkness will hide me
   and the light become night around me,”
¹² even the darkness will not be dark to you;
   the night will shine like the day,
   for darkness is as light to you.
 ¹³ For you created my inmost being;
   you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
¹⁵ My frame was not hidden from you
   when I was made in the secret place,
   when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
   all the days ordained for me were written in your book
   before one of them came to be.
¹⁷ How precious to me are your thoughts,^[a] God!
   How vast is the sum of them!
¹⁸ Were I to count them,
   they would outnumber the grains of sand—
   when I awake, I am still with you.


thank you, oh Lord, for knowing my inmost being.  and for loving crosby more than i could ever know.

note his sweet NICU haircut.  both sides are shaved and awesome from his IV access.  :)

dance.

first fridays after five.

don't tell me she doesn't have moves...

::orange::

so, finn has decided that he has a favorite color.

and that color is orange (he must take after whit and brandon!)
at first i thought it was the only color that he could recognize, but he truly is loving all things orange right now.

almost every morning, he insists on wearing this orange shirt.  and he always wants an orange diaper liner in his diaper.  and this morning, he really wanted lily to wear her orange dress.  so, it was orange around here today...

and in crosby news, things are going well.  

every day i am astounded by how much i don't know about NICU babies and all we have to learn.  

his nurse practitioner was explaining to me today that during the third trimester, babies receive the bulk of their phosphorous and calcium.  and since he did not get a third trimester, he is not receiving these vital components to his growth.  she explained that if he doesn't receive enough calcium and phosphorous, he won't grow length wise and his bones will be too brittle.  typically, they like to fortify the feeds, but he has not tolerated fortification thus far.  so, it is a puzzle figuring out how to supply him with his nutritional needs while not upsetting his GI system too much.  they have started a third type of fortifier tonight and we are praying he can tolerate it well!

we are constantly amazed by how complex and intricate his NICU stay has been.  and we are so thankful for his healthcare team!!!  

a big week.

crosby has had his best week yet.

it has really been the first week with no setbacks at all.  he has truly progressed every day and it has felt like a miracle.

yesterday, i got to give crosby his first bath!  amazing that at 7 weeks he just was well enough to be bathed for the first time!  (he had been getting baths with warm wipes, but this was his first bath in water)  we had an amazing nurse over the weekend and she created a wonderful set up for his bath that included bubbling water to massage his back!  he loved every minute of it and it is a memory i will cherish for the rest of my life.

at 34 weeks, he weighs about 4 1/2 pounds.

he was weaned down from high flow oxygen to a much lower flow and is doing great.

they were able to remove his centrally placed IV and he is now without any IV access!

and i have been able to try to start to nurse him.  he has not really taken to it yet, but it makes me feel like i have a much more vital and motherly role in his care.  it is wonderful.  we are praying that he learns to nurse soon, as that will be one of the most crucial requirements for discharge.

we could never thank you all enough for all of your support and encouragement.  daily we are astounded and humbled by the amazing community we have praying for and supporting us.  thank you!

happy easter!

our easter miracle.

my friend, kristi, made this hat for crosby.  with each stitch she prayed for him.  

what an amazing and powerful gift!

camp.out.

during my pregnancy, we had been planning our inaugural family camping trip this spring.

with crosby's early arrival, our plans to camp had to be slightly modified.  we still were committed to camping, as lily was so excited with the prospect of the adventure.  but, we didn't want to be far from the hospital or anywhere that would not have cell phone service in case the hospital called.

enter the backyard camping trip...

yesterday during nap time, ryan and i set up the tent (er, house...yes, we know the tent is enormous.  you see, when i purchased it for ryan, i was hoping our family would grow.  and i have hopes that we can share our tent with family or friends.  and they always say you should buy a tent that sleeps one or two more than you plan on having in the tent for adequate space...so a ten, yes ten, person tent seemed reasonable).  lily peeked from her window the entire time we set it up and was giddy when she got up.  she could hardly wait to get in.

our fearless grillmaster.  it is almost like a bonfire, right?

getting ready for s'mores!

lily was SO excited about her sleeping arrangements, that she immediately wanted to go to bed once we got in the tent.  we tried to tell her a story before bed, but she was truly so excited about her sleeping bag and lantern, that she just wanted to be tucked in!

finn has this awesome down sleep sack that kept him nice and toasty in the night.

once the kids were tucked in, ryan and i enjoyed a nice evening from our deck.  we could hear the kids chatting back and forth from their beds and it was absolutely heartwarming.  they were loving it.

once it got cool and late, ryan and i decided it was time to crawl into our sleeping bags.  the kids were sleeping peacefully and it seemed perfect.

well, almost perfect...
a few small details...

-within ten minutes of us getting into the tent, a bird did it's business all over our rain fly.  awesome.
-our backyard is on a rather significant slant, and so all night we all slid to the bottom of the tent.
-it rained a bit in the night.
-and a few hours before the sun rose, i became so worried my kids were cold that i couldn't sleep.  they were both sleeping soundly, but i was so worried about them that i couldn't get any shut eye.  so, with just a bit of darkness left, we decided it was time to call the camp out quits and bring the kids into their warm beds.

however, when ryan got finn up to bring him in, he had the biggest smile on his face and the first thing he said was, "lily coming??"
i almost cried.  it was the sweetest moment when i realized that the first thing he thought of when being woken up from a deep sleep was whether his big sister would be joining him.  oh how he adores her.

and today lily has asked over and over if we can camp again tomorrow night.

it was perfect.

::our big man::

crosby has graduated from his isolette (as sam calls it his "clear plastic playpen") to a bassinet!

it makes him look so big and like a normal newborn!  

his isolette still hovers nearby because he is having a hard time keeping his temperature up, but we are thankful he is, as his attending says, "out of the box!"

(he looks quite bulky in some of these pictures as he was wearing a onsie, an outfit, swaddled in two blankets and covered up with two blankets...but he was warm!) :)

grabbing his oxygen 

crosby vs. the bear

bear wins...but not for much longer!

i so love...

the way he says "lily."



warm spring nights.
the sun staying up longer.
my kids playing happily with beautiful squeals of laughter for the whole afternoon.
lily and finn dancing in their skivvies and loving childhood.



wonderful.  can't wait for crosby to join the fun.

33 weeks (corrected age) and FOUR pounds!

whoop!!

::our little one::

control.

crosby's central line had to come out because it was no longer centrally placed and it kept on occluding when they were trying to use it.

they put a peripheral IV in his scalp to be able to continue to give him fluids and medications.  i certainly didn't like seeing my baby with an IV in his head, but i completely understand how tiny his veins are and that that was his best access.

unfortunately, his needs are too great right now for just one tiny IV and they needed to be able to have central access.  so, we knew they would probably have to do a small procedure to obtain access.

yesterday, i went to visit him and got turned away at the door because they were about to start the procedure.

then, about an hour later, ryan went to visit him and also got turned away because they were still working on him.

finally, several hours later, i was able to go visit him after they had gotten the line placed (again, on his head right above his ear).

when i went into the NICU, he seemed ok.  he breathing was more labored and he seemed uncomfortable.  i had hoped to hold him, but i was not able to because he had been so stressed over the last few hours.

i sat with him for a while and just put my hand on him to try to bring him comfort.

when i left the NICU, i couldn't put my finger on why i was feeling so sad.  overall, he is doing well. he is making small steps of forward progress.  but, my heart was just hurting so much.

as we are moving out of the more critical stages of our NICU stay, i feel less worried on a moment to moment basis.  and yet my heart still hurts. then  it hit me last night that one of the harder aspects about all of this is the complete lack of control we have in crosby's care and the amount of time we can spend loving and soothing him.

i cannot control when i can hold him.
i cannot control when i can even visit him some days.
i cannot control how he is soothed in the night.
i cannot control how he is positioned or swaddled when i am away.
i cannot control his care right now.
i cannot control the sweet words whispered in his ear.
i cannot control the hours he spends alone in his isolette.

and as a mother, it makes me feel so helpless and sad.

but, then i remembered as my heart was aching, that i am thankfully NOT in control at all.
our awesome Lord is.

and He loves crosby more than i could ever imagine.
and He is by his side constantly even when ryan and i cannot be.
and He is his comforter and Father.
and He will never abandon or leave crosby, even in the still hours of the night when ryan and i cannot be there.

and that brings me so much peace.

my heart will ache until the moment crosby is home.
but, i am so thankful that i am not the one ultimately in control.

praise be to God.

"praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
- 2 cornithians 1:3-4
(a good friend of mine just emailed me this verse...it was perfect for the place i currently find myself)

monday monday.

crosby is doing well today.  much better than at the end of last week.  

they decided to treat him as being suspicious for necrotizing enterocolitis even though his labs came back looking pretty good.  his belly was just too sick seeming.  so, for crosby, that meant a week of antibiotics and not being fed.  and although i hate to see him not getting to eat, it seems to have done much good.  his tummy seems the healthiest we have seen it in a long while and he seems very comfortable.

last night they decided to start him back on tiny tiny feeds (about 2 mls) every three hours to see how he tolerates it.  we are praying he can handle it well.  

the NICU staff has been so good to us and they have been taking such good care of our little man.  

but we will be so happy when they get to hand the reigns over to us!

and on a light note...

ryan has been going into work a bit before six every morning to spend some time with crosby before work.  

most often, he is wearing his scrubs when he is there.  

last friday, a nurse practitioner walked up to ry when he was standing at crosby's isolette and in a firm voice asked, "is this your baby?"

ryan of course said, "yes."

she just looked at him and walked away.

it seemed a bit rude and ryan was wondering why she hadn't told him how crosby was doing and what his plan of care was.

luckily, crosby's nurse witnessed the exchange and realized that the nurse practitioner was asking ryan if crosby was ryan's patient...not his actual baby.  she had thought ryan was the doctor taking care of crosby and walked away because she thought ryan was assessing crosby.  oops.  glad it got cleared up! 

lily dressed finn today...

wouldn't ryan be so proud...

(yes, finn is giving himself a shot in the mouth.  awesome.)

and a quick crosby update...he looks a bit better today.  they put a tube down his throat and were able to really decompress his belly.  his stomach looks much better and he seems more comfortable.  we await lab results...